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some acknowledgement regarding diagnosis process..... about time!Streamlining the diagnosis process which right now can take years and numerous doctor visits.
•Creating a new medical specialist – the autoimmunologist.
Economic Burden
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Economic Burden
http://www.prnewswire.com/news-releases ... 35999.html
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Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Dear Gabes
Thanks for posting....made me think.....what does "Chronic" mean......it means (BY DEFINITION) the medical industry has not found (or seriously looked for) a lasting cure....so it is long lasting or never ending.
So treatment is repetitive for as long as you live......and repeat purchase is gold dust in any business model.
Thus there is a huge economic burden on the individual and/or the State for chronic 'autoimmune' diseases that 'Science' cannot find a real cure for....... and huge potential profit for the medical industry to treat rather than cure.
best, (a very cynical) ant
Thanks for posting....made me think.....what does "Chronic" mean......it means (BY DEFINITION) the medical industry has not found (or seriously looked for) a lasting cure....so it is long lasting or never ending.
So treatment is repetitive for as long as you live......and repeat purchase is gold dust in any business model.
Thus there is a huge economic burden on the individual and/or the State for chronic 'autoimmune' diseases that 'Science' cannot find a real cure for....... and huge potential profit for the medical industry to treat rather than cure.
best, (a very cynical) ant
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"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
cynacism is one of my key coping strategies! totally welcome here!
the fact that there is acknowledgement for the need to have specialists looking at immune reactions, i think for those with multiple Autoimmune conditions this is important. a wholistic approach.
I know that my GI would only deal with the Gut issues, anything happening elsewhere in the body he was not interested in.
this article coupled with the type of studies such as the T-cell that i posted the other day, we may end up with specialists that may 'get it' rather than scratch their heads and write a script to mask some symptoms.
dont see this happening anytime soon, based on the amount of people and the ages of people joining this family, something in the medical profession has to change .....
the fact that there is acknowledgement for the need to have specialists looking at immune reactions, i think for those with multiple Autoimmune conditions this is important. a wholistic approach.
I know that my GI would only deal with the Gut issues, anything happening elsewhere in the body he was not interested in.
this article coupled with the type of studies such as the T-cell that i posted the other day, we may end up with specialists that may 'get it' rather than scratch their heads and write a script to mask some symptoms.
dont see this happening anytime soon, based on the amount of people and the ages of people joining this family, something in the medical profession has to change .....
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Ant, I believe you are onto something. Lots of my friends have definitely drunk this Kool-Aid (and from the effects on their thinking, it's got some non-safe ingredients!).
A friend of mine just told me I need to go back to eating gluten, so the antibodies will be in my bloodstream, and they can find them. Anyone want to sign up for that program? The results of such a test might not find the magic answer in the blood; I have already had a biopsy showing CC; the test will have nasty consequences, I can be confident, since I just inadvertently inflicted such a 'challenge' on myself this month; and it won't tell me anything I don't know. So - no benefit to me at all, but there would be, perhaps, a persuaded MD, after plenty of expense and trouble. And - what's the risk of avoiding gluten, if by some bizarre chance the biopsy was wrong and I don't have MC/CC? Why - nothing. No risk at all. Lots of people choose their food limitations, for reasons both whimsical and wise.
It reminds me of that joke, "doctor, it hurts when I do that..." I'm pretty sure if I'd told me great-grandfather (a doctor who believed that a plant in your sick room would steal all your air), "I feel sick when I eat _____" - he would have said, "well, then, don't do that." (Of course it's not so simple - the symptoms come much later and it's not so easy to decode, as I don't need to remind us here...)
I am working on pleasantly worded comments that end this line of conversation. It's not my first - or my second - go-round with a well-meaning person saying unhelpful and unfounded things (which boil down to the idea that I must be mistaken... and gosh, we're all mistaken sometimes, but it strikes me I have a pretty good shot in this case, since I'm the one who's actually given it critical thought). I am thinking I'll need 5-6 pleasant remarks and a couple of show-stoppers I can escalate to, in a controlled manner, when I am getting irritated ;) I believe I'll laminate it, like your card for chefs. Heh heh.
Gabes, I also had that experience that my original GI doc hadn't the faintest interest in non-GI symptoms that I had noticed were most pronounced when my D/cramping were worst. Coughing and throat-clearing were really dramatic at that time, and I've noticed the same on this go-around.
Sara
A friend of mine just told me I need to go back to eating gluten, so the antibodies will be in my bloodstream, and they can find them. Anyone want to sign up for that program? The results of such a test might not find the magic answer in the blood; I have already had a biopsy showing CC; the test will have nasty consequences, I can be confident, since I just inadvertently inflicted such a 'challenge' on myself this month; and it won't tell me anything I don't know. So - no benefit to me at all, but there would be, perhaps, a persuaded MD, after plenty of expense and trouble. And - what's the risk of avoiding gluten, if by some bizarre chance the biopsy was wrong and I don't have MC/CC? Why - nothing. No risk at all. Lots of people choose their food limitations, for reasons both whimsical and wise.
It reminds me of that joke, "doctor, it hurts when I do that..." I'm pretty sure if I'd told me great-grandfather (a doctor who believed that a plant in your sick room would steal all your air), "I feel sick when I eat _____" - he would have said, "well, then, don't do that." (Of course it's not so simple - the symptoms come much later and it's not so easy to decode, as I don't need to remind us here...)
I am working on pleasantly worded comments that end this line of conversation. It's not my first - or my second - go-round with a well-meaning person saying unhelpful and unfounded things (which boil down to the idea that I must be mistaken... and gosh, we're all mistaken sometimes, but it strikes me I have a pretty good shot in this case, since I'm the one who's actually given it critical thought). I am thinking I'll need 5-6 pleasant remarks and a couple of show-stoppers I can escalate to, in a controlled manner, when I am getting irritated ;) I believe I'll laminate it, like your card for chefs. Heh heh.
Gabes, I also had that experience that my original GI doc hadn't the faintest interest in non-GI symptoms that I had noticed were most pronounced when my D/cramping were worst. Coughing and throat-clearing were really dramatic at that time, and I've noticed the same on this go-around.
Sara
.Sara wrote:Coughing and throat-clearing were really dramatic at that time, and I've noticed the same on this go-around
As you probably already know - throat congestion is a common sign of casein sensitivity, but I'll bet a GF cookie that precious few GI specialists are aware of that. It usually happens within a half-hour or less, of ingesting the casein. It may also be connected with other food-sensitivities, though, for all I know.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex,
I didn't know! And I bet I get it from other foods, too, though that may be a personal quirk and less general than the casein reponse. Gonna staple a pencil to myself and start writing down every bite and every symptom - I don't know what causes it for me (been DF for some time). Thank you.
And - thanks for the link to these folks earlier today: http://www.glutenfreesociety.org/
I'm almost done watching the first chapter of 'Glutenology' and am flabbergasted. Now, I really do get it. I also understand why someone could have a clean biopsy (yay, those who've gone before and showed us the way!), and still have intolerances. I can't articulate it yet - still metabolizing the info.
I'm pretty sure I'll be able to refrain from slapping my friends' hands away from the bread at dinner this evening. But it sure isn't going to be hard to abstain myself!
Great resource.
Sara
I didn't know! And I bet I get it from other foods, too, though that may be a personal quirk and less general than the casein reponse. Gonna staple a pencil to myself and start writing down every bite and every symptom - I don't know what causes it for me (been DF for some time). Thank you.
And - thanks for the link to these folks earlier today: http://www.glutenfreesociety.org/
I'm almost done watching the first chapter of 'Glutenology' and am flabbergasted. Now, I really do get it. I also understand why someone could have a clean biopsy (yay, those who've gone before and showed us the way!), and still have intolerances. I can't articulate it yet - still metabolizing the info.
I'm pretty sure I'll be able to refrain from slapping my friends' hands away from the bread at dinner this evening. But it sure isn't going to be hard to abstain myself!
Great resource.
Sara
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Sara
not sure if gave you an official welcome - so gday from australia
a few years ago about 9 months before the MC diagnosis i did have a GP that got me to eat gluten for 2 weeks for a celaic blood test. Despite my explaination to her that " i am pretty sure it will be negative and that i dont need a medical reason, all i know is that if I avoid Gluten, Yeast and Lactose i feel good, if i do have those items in my diet i get fatigued, i get headaches, and feel like crap for a few days)
i did it, the test was negative, it took me 2 weeks to recover from that.
tracking EVERYTHING in a diary is a really good asset, it was via this diary (nicknamed 'winning the pooh diary') that i figured out i couldnt eat carrots and cauliflower in the same meal or the same day. eaten seperately i am ok, eaten together i have issues, potentially this could be classed as weird (then again lots of stuff with mc is 'weird')
i track;
duration of sleep, (and how many times i woke up through the night)
symptoms,
any difference to meals (timing or ingredients)
BM's, (colour, texture, smell, any pain before or during passing etc)
urine (frequency not volumne ),
supplements taken and what time (the diary has helped to me to figure out it is better to take the potassium powder mid afternoon rather than mid morning)
environmental/external factors ie hot and humid or pleasant weather, was the work day stressful, fasting blood test
listening to my body and being able to review the reactions, it has helped me to plan activites/treatments so that i wont feel poorly at work.
Some days i do miss foods from 'pre MC days' but generally my mind and tastebuds have adjusted to the revised eating plan to suit MC. if I do crave those foods i remind myself there is consequence aside from the possible MC symptoms at the time of eating that item, any occurance of MC flare is doing damage to my digestion sytem and my immune system, If i want to be well enough to work the next 15 - 20 years I have to nurture my body now.
not sure if gave you an official welcome - so gday from australia
a few years ago about 9 months before the MC diagnosis i did have a GP that got me to eat gluten for 2 weeks for a celaic blood test. Despite my explaination to her that " i am pretty sure it will be negative and that i dont need a medical reason, all i know is that if I avoid Gluten, Yeast and Lactose i feel good, if i do have those items in my diet i get fatigued, i get headaches, and feel like crap for a few days)
i did it, the test was negative, it took me 2 weeks to recover from that.
tracking EVERYTHING in a diary is a really good asset, it was via this diary (nicknamed 'winning the pooh diary') that i figured out i couldnt eat carrots and cauliflower in the same meal or the same day. eaten seperately i am ok, eaten together i have issues, potentially this could be classed as weird (then again lots of stuff with mc is 'weird')
i track;
duration of sleep, (and how many times i woke up through the night)
symptoms,
any difference to meals (timing or ingredients)
BM's, (colour, texture, smell, any pain before or during passing etc)
urine (frequency not volumne ),
supplements taken and what time (the diary has helped to me to figure out it is better to take the potassium powder mid afternoon rather than mid morning)
environmental/external factors ie hot and humid or pleasant weather, was the work day stressful, fasting blood test
listening to my body and being able to review the reactions, it has helped me to plan activites/treatments so that i wont feel poorly at work.
Some days i do miss foods from 'pre MC days' but generally my mind and tastebuds have adjusted to the revised eating plan to suit MC. if I do crave those foods i remind myself there is consequence aside from the possible MC symptoms at the time of eating that item, any occurance of MC flare is doing damage to my digestion sytem and my immune system, If i want to be well enough to work the next 15 - 20 years I have to nurture my body now.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
G'day, Gabes! And thanks very much for sharing what you're tracking. That will help me - have to decide whether I'll do it on computer or on paper. I love tracking things, and have often learned things I could never have observed otherwise. Your example of two safe ingredients taken together is a great illustration. I would never think about combinations - mixing up interesting combinations is such fun. (Ooh, maybe that's another suspect in the disturbance folks noted in the 'baked goods' thread?)
I think some of my symptoms are fluctuating just with the healing process, but over time I will know much better about the effects of eating specific foods.
Getting a notebook now... I'll need that even if I go to a spreadsheet, for those times when I'm not right by the computer. Thanks.
Sara
I think some of my symptoms are fluctuating just with the healing process, but over time I will know much better about the effects of eating specific foods.
Getting a notebook now... I'll need that even if I go to a spreadsheet, for those times when I'm not right by the computer. Thanks.
Sara